Login required to started new threads

Login required to post replies

Bunch of weird health symptoms: from bitter taste to general fatigue
Quote | Reply
I am not sure it is the right place to post my problem but it is the only international forum I do read regularly and I recon there might be various people with various experiences here. Part of my symptoms are sports related in terms that they either bother me during training or limit my training ability.

I was diagnosed with reactive arthritis early this year as my joints started to be constantly sore and stiff. The analyses for rheumatoid arthritis came back clear. I felt very tired all the time and my energy levels were very low. My ASO titre was exceptionally high, close to 800 (max being 200). I was convinced by various docs to remove the tonsils as a potential location of strep infection (I have had no tonsillitis or any other acute throat problems). The operation was 6 mo ago.

Some time after the operation my mouth started to feel really dry. If I go out for a 3 km run I have to carry a huge water bottle. I have to carry the bottle even if I am not going to run, actually. About a month ago I noticed that foods started to taste weird, eg all sweet things taste bitter and tangy. My energy levels are still low and my ASO is still at 700. I have not been training very heavily, I can do only 3-4 times a week but recently I have had some sort of nauseous feeling during the training. I have used to 70-80 km bike rides but last rides I have felt rally tired and unable to continue at half of the distance. I also have started to have insomnia and night sweats (sounds like pre menopause, but a tad too early for age 41). My GP prescribed me some sort of enzyme that aids digestion and this enzyme helped a little. When I started taking it, my feeling improved visibly but it did not clear the bitter taste or dry mouth completely.

So if anyone has any idea, especially through an experience with the symptoms above, I'd be grateful.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Did you get your thyroid checked? One autoimmune disorder often leads to and may mask another.

AP

------------------------
"How bad could it be?" - SimpleS
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
I am far from a doctor or medical expert, but the bitter taste could be kidney related. I would be sure to ask your doctor to test your kidneys as a lot of what you are describing sounds like something similar that happened to someone in my family.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
If you have doctors' attention to this problem, I would encourage them to examine your hormone levels. Yes, early 40's is young, but certainly not out of the question, to have dramatic changes that would be causing at least some of the symptoms life night sweats.

DFL > DNF > DNS
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
ASO titre being that high needs treatment. strep is somewhere and may need a month of treatment. Kids get something called PANDAS which can even affect development so would not surprise me if it altered taste perception etc.

I agree with AndyPants if your thyroid was not checked it should be

lyme?
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Have you been tested for Lyme or other tick borne diseases? Been bite by any ticks? Had any strange rashes?

300,000 folks get Lyme every year and testing is inaccurate. Diagnosis is clinical.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
How did they diagnose your reactive arthritis? (I also have this, and I remember it being a bitch for them to figure out.) I'm not a doctor, but I think the auto-immune diseases are very tricky and I'm wondering if you might have another issue. When I was going through the diagnostic process (now about ten years ago) they ran tests against genetic markers for a couple of things that had the same symptoms as reactive arthritis. I have a family history of auto-immune diseases, so if you haven't, you might investigate what conditions run in your family.

I'm not sure how much has changed over the years, but when I was diagnosed, they didn't really know what triggered my arthritis but my doctor told me there was a correlation with various food-borne illnesses. I've also read that food sensitivities or allergies can cause similar joint pain and swelling. I don't know where you live, but it might be worth consulting a nutritionist or naturopath and do some sort of elimination diet to see if your issue is food-triggered. I've also had good results with acupuncture.

My final question is what did they use to treat your arthritis. I was on all kinds of crazy meds at first, so you might also investigate side effects of whatever drugs you might be on. (Most of the drugs they gave me were later recalled for being dangerous, good times!) I had six months of terrible pain and no answers before they even got to arthritis (mine first manifested in a weird joint in my shoulder.) It was awful and took me many months to sort out the treatment and get it under control. I've been fortunate to not have any flare-ups and have been medication free for a while now.

I hope you can find answers. It's scary stuff to deal with!

Michelle

------------------------------------------------------------
The beatings will continue until morale improves

My blog
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Thank you all for your ideas and suggestions. A lot of issues to think about. Ticks are very common here, so this is something to look into, even if the symptoms do not match 100%.

My reactive arthritis was diagnosed by making sure that the arthritis symptoms were not caused by rheumatoid arthritis, I understand that there are tests for that, some sort of blood test results. When my joints were stiff in the mornings I took Meloxicam for ca month but then I had my tonsils removed and this also cleared the joint issues. The docs were sure that tonsillectomy will also bring down ASO but it did not (at least during the 6 months).

I will be talking to my doc tomorrow and I'll see what she suggests next.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Have you tried an elimination diet (sorry I just realized this was already suggested)? Basically you exclude all processed foods, nuts, dairy, soy, gluten, etc. If you have any food intolerances you can develop what is called "leaky gut syndrome" which then can lead to a host of autoimmune disorders because the barrier of your stomach has broken down. Things then pass through and trigger your immune system. I had weird symptoms for years and was treated for all sorts of things such as asthma, until I went to a naturopath. Food sensitivities can prevent you from making enough stomach acid to digest food, thus you are unable to absorb nutrients (B12, etc) which can lead to fatigue. I was told if I had continued on this road eventually I would have developed some sort of autoimmune problems. It explained my low energy and deficiencies such as B12, Vit D and thyroid issues. This is not the sole cause of autoimmune but what you eat plays a huge role in your health. You may not always have gi symptoms with a food issue.

Once I started adding things back into my diet I figured out fairly quickly it was soy. I also had weird tastes in my mouth. As long as I avoid tofu and the like, I have no problems. I was at the point of being malnourished as evidenced by my labwork when I finally went to a naturopath after 3 other docs. All it took was 6 weeks of clean eating, Betaine HCL pills and probiotics and getting creative with food.

I hope this helps and good luck!
Last edited by: madonebug: Sep 5, 13 12:12
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [madonebug] [ In reply to ]
Quote | Reply
The elimination diet seems also something to consider, I have been thinking about it but not been sufficiently motivated yet. I do not eat soy, I have been thinking of either gluten or dairy or both, but it is very hard to arrange - I have three kids and I have to cook for them as well and also the options for eating out on a special diet are quite limited over here. I am not sure I would be able to find a naturopath in Estonia at all.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [KathyG] [ In reply to ]
Quote | Reply
After doing a lot of reading I was nearly 100% positive it is Lyme. The doctor was very hesitant but agreed to do the blood tests. These came back negative today. I get along well with our family doctor, she is a friend of a friend but this time she seems to be really reluctant to run any tests or do a more thorough examination. She basically orders blood tests one by one instead of doing various tests at once. I think the thyroid would be next to check but I am not sure how to convince the doc. Probably I'll pay a visit to my favorite acupuncture specialist instead.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
The normal blood test for Lyme is only accurate in maybe 40-65% of patients. Sorry to tell you just because blood test was negative does not mean you don't have Lyme.

I had the basic test Elisa many time over 2 years and it wasn't until I had a Western Blot test that it came back positive. Most labs run Elisa first and only if it is positive will the run a Western Blot. I had physicans ask for Western Blot but it wasn't done since my Elisa was negative.

Testing for Lyme is for one strain of the bacteria and there are now over 50 different strains as well.

To get tested and treated I had to go outside my normal network of physicians and insurance and self pay to see a specialist. Most of my costs have been covered by insurance not my specialist who spends 45-75 minutes a visit with me.

I hope you find an answer.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [KathyG] [ In reply to ]
Quote | Reply
I should have said earlier that Lyme is a clinical diagnosis. If you read the CDC guidelines they have reporting criteria but say diagnosis is clinical. A test result only helps clinical when looking at the big picture and your health.
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
zinc deficiency? affects taste, immune system function...you need Vitamins A and E to help absorb zinc so they need to be balanced too...foods high in Copper can prevent zinc absorption as can poor digestion overall (which could lead to that elimination diet idea combined with glutamine, digestive enzymes and probiotics to help improve digestion)....just some ideas...good luck getting to the bottom of it...
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Kivisisalik wrote:
She basically orders blood tests one by one instead of doing various tests at once. I think the thyroid would be next to check but I am not sure how to convince the doc. Probably I'll pay a visit to my favorite acupuncture specialist instead.


This attitude baffles me. Find another PCP who will get you the tests you need or refer you to a rhematologist (assuming you can't self refer). I'd get lymes, ANA, SSA, SSB, TSH, rheumatoid factor, CCP at a minimum. the dry mouth has me wondering about Sjogren (combined with the arthitis).

http://harvestmoon6.blogspot.com


Last edited by: kathy_caribe: Sep 25, 13 9:01
Quote Reply
Re: Bunch of weird health symptoms: from bitter taste to general fatigue [Kivisisalik] [ In reply to ]
Quote | Reply
Dear Kivisisalik ,
I hope you feel better now. My idea might look pretty strange, but my husband had arthritis a few years ago and got cured by a simple diet - he consumed only tea with honey and fresh fruit (cherries) for a month each year during spring - really difficult, though, for all of us - after such a diet he looked like a ghost, but after three or four years felt better. We also stopped eating meat. Drinking alcohol and smoking are forbidden. If you are interested and need more info, write back.
We are keen on sports and travel - one of our favourites are fitness cruises -can't wait for the next... ;)
http://www.fitnesscruises.org/
Quote Reply